When children are dying – the distance between closeness and professional distance in paediatric palliative care

regula2Regula Buder, Nurse Practitioner, MAS FHO, Palliative Care, Geschäftsleitung Stv. Kinderspitex Nordewestschweiz, Switzerland, explains the background to her longer article that is published in the November/December issue of the European Journal of Palliative Care. 

As a professional in paediatric palliative care, you often get the same reaction as when someone asks you about your profession: People look at you with a respectful gaze, and often there is a moment of silence, mirroring the unspeakable nature of the fact that children are dying. And this is followed by sentences such as: “That must be a hard job” or, even more often, “I could never do that work”. Entering Canada for a Palliative Care Congress, a customs officer said to me when I explained about my job: “You must have a big heart.” Yes, indeed, working in paediatric palliative care and being there with the families when the children are dying, does need a big heart. But there’s much more to it than that.

Researching meaning for professional caregivers when children are dying, we realised that it is not only within the private social context where it is difficult to communicate. Professionals may also find it difficult. They talk about symptom management and about what they can do. Yet, they hardly ever talk about how they feel in these situations, and what it means to them, both as a professional and as a human being.

Addressing ‘paediatric palliative care’ among healthcare professionals of various disciplines is necessary to raise the awareness of its particularity and its rich spectrum. Talking positively about this challenging work, which never becomes routine, creates an understanding of the nurse’s personal vulnerability and opens a space for it. And raising awareness of the expertise, knowledge and personal involvement against the background of all four palliative care dimensions (physical, mental, social and spiritual), allows us to offer paediatric palliative care in an authentic and vivid way, while taking into account the lifeworld of the affected persons.

The closeness of nurses to the child is the main characteristic of paediatric palliative care. Nurses dedicate themselves to closeness – it brings to life the very essence of their profession. However, death and dying of children raises issues of deep involvement in societies of Western culture. Therefore we have to ask: How can nurses in their professional role cope with the tension between personal closeness and professional distance? It is important to focus on what supports the nurse in her daily work in paediatric palliative care. Being aware of these aspects as relationship and vulnerability, as well as the nurse’s role, enhances the ability to find the balance between closeness and professional distance.

And this enables the nurse to do this work, with expertise and professionalism, as well as with a big heart.

4_cover_2-jpgRead the full article in the European Journal of Palliative Care
This post relates to a longer article, Nursing paediatric palliative care patients, by Regula Buder and Prof. Dr. André Fringer, published in the November/December 2016 edition of the European Journal of Palliative Care (vol. 23.6). If you have a web-based subscription to the journal you’ll be able to download this issue, plus all articles in the journal archive.

You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription. Members of the EAPC receive discounted subscription rates to the journal – click here to subscribe online.

Read more posts relating to articles published in the European Journal of Palliative Care on the EAPC Blog. You may also be interested in the recent series on children’s palliative care also published on the blog in partnership with the EAPC Taskforce on Paediatric Palliative Care.

 

ejpclinkedinEJPC Palliative Care Development Award 2017 – nominations form now online.

Do you know someone who has made a major contribution to palliative care policy development? Why not nominate them for the EJPC Palliative Care Policy Development Award? Click here to nominate. Launched by the European Journal of Palliative Care in collaboration with the European Association for Palliative Care, the award is aimed at professionals working in palliative care worldwide who have made a substantial contribution to policy development through research, clinical practice or as policy activists. The 2017 Award will be presented at the 15th World Congress of the EAPC in Madrid, Spain (18–20 May 2017). Deadline for applications: 31 March 2017.

 

 

 

 

 

 

 

 

 

 

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